Infants and Toddlers with or at Risk for ASD: Early Identification and Evidence-based Practices.

1. Infants and Toddlers with or at Risk for ASD: Early Identification and Evidence-based Practices. Cox, A, & Shaw, E. (2011). Infants and toddlers with or at risk for ASD: Early identification and evidence-based practices. Presentation at the annual Smart Start Conference. Greensboro, NC, May 3, 2011. National Professional Development Center on Autism Spectrum Disorders, FPG Child Development Institute, The University of North Carolina at Chapel Hill.

2. National Professional Development Center on Autism Spectrum Disorders A multi-university center to promote use of evidence-based practice for children and adolescents with autism spectrum disorders FPG Child Development Institute, University of North Carolina at Chapel Hill; M.I.N.D. Institute, University of California at Davis Medical Center; Waisman Center, University of Wisconsin at Madison

3. Goals of the National Center • Promote development, learning, and achievement of children with ASD and support families through use of evidence-based practices • Increase state capacity to implement evidence-based practices • Increase the number of highly qualified personnel serving children with ASD

4. What do we do?

5. Bridge the Gap Research-based practices Replicable practices in programs and classrooms

6. Topics of this Presentation • Characteristics of autism in infants and toddlers • Early screening and diagnosis • Evidence-based practices for toddlers with ASD

7. Part I Characteristics of Autism in Infants and Toddlers

8. Autism Spectrum Disorders • Are developmental disorders • Symptoms evolve and change with development • “spectrum disorder” • Consists of the following primary diagnoses: • PDD-NOS • Autism • Asperger ‘s syndrome

9. Core Triad of Characteristics • Impairments in Social Interaction • Impairments in Communication/Language • Restricted, Repetitive, and Stereotyped Patterns of Behavior, Interests, and Activities

10. DSM-IV Symptoms of Autism • Qualitative impairment in social interaction • decreased/absent nonverbal behaviors to regulate interactions • lack of spontaneous sharing • lack of social reciprocity • failure to develop peer relations

11. DSM-IV symptoms of autism • Qualitative impairments in communication • delay in communication/speech development • lack of appropriate imitative or pretend play • lack of initiating and sustaining conversation • stereotyped, repetitive language

12. DSM-IV symptoms of autism • Repetitive, restricted patterns of behavior, interests, and activities • preoccupation with parts of objects • repetitive motor movements • abnormally preoccupied with interests • rigid adherence to nonfunctional rituals, routinesrarely endorsed

13. Not all DSM-IV criteria for autism applicable for young children (Stone 1999)

14. How early do symptoms or characteristics of ASD emerge?

15. Characteristic developmental problems in 24 month olds with ASD In virtually all children • Problems with imitation • Joint attention deficits • Receptive and expressive language delays and deviance • Immature functional and symbolic play • Lack of typical emotional expressiveness and communication

16. Developmental problems in 18-24 month olds with ASD In many children • Increased repetitive behaviors • Increased parental reports of sensory responsivity • Sleep, eating, and behavior problems

17. Imitation • Imitation • Imitation is used by typically developing children to acquire communication, social, and motor skills • Imitation skills of children with ASD tend to be poor • Impairments in imitation often persist throughout life in individuals with ASD

18. Problems imitating other people’s actions (Rogers et al., 2004) Autism specific problems with all types of imitation * *

19. Deficits in play • Symbolic play underdeveloped • Functional object use infrequent • Sensorimotor play – less novelty and more repetition • Fewer advanced play schemes

20. Repetitive and Exploratory Play (Ozonoff et al., 2008) • Atypical Uses of Objects • Spins (frequency) • Rolls (frequency) • Rotates (duration) • Unusual Visual (duration) *** ** ** * *** * Sample – 12 month olds, 9 ASD, 10 DD, 47 TYP

22. Additional Learning Characteristics and Needs • Sensory issues: Heightened or decreased experience of sounds, lights, movement, touch, smell or taste, or fascination with sensory experiences • Contribute to distractibility, difficulty in shifting attention • May lead to avoidance behaviors • May lead to sensory seeking behavior • May impact learning, social interactions, behavior

23. Sensory/repetitive behavior(Rogers et al 2003) Total sensory scores of 2 year olds on Dunn’s Sensory Profile Total repetitive behavior scores on ADI * * * *

25. Developmental rates from 6-24 months: Language development 9 children with ASD; 27 with typical development p<.001 at all ages except 6 months dev.age Months

27. Developmental rates from 6-24 months: Motor development 9 children with ASD; 27 with typical development p<.001 at all ages except 6 months dev. age Months

28. Prototypic “early autism profile” Prototype of 24 month old profile

30. Take home messages • Onset of ASD symptoms more of a continuum than a dichotomy. • Onset of ASD symptoms typically occurs between ages 1-3. • Deceleration of development occurs in the majority of children. • Different routes to full symptom expression may represent individual differences. • Children on the spectrum have different early developmental characteristics than typically developing children.

31. Part II: Early Screening and Diagnosis

32. Value of Early Identification Mandell et al., 2005 • Mean age of autism diagnosis = 34 – 61 months • Mean age of first parental concern = 18 – 19 months • Gap means 1-2 years before diagnosis made • Treatment thus delayed • Intensive early intervention = better outcomes • Earlier identification  earlier intervention n = 965

33. What are the Red flags of ASD?

34. Red flags of autism in infants • Impairment in Social Interaction • Lack of appropriate eye gaze • Lack of warm, joyful expressions • Lack of sharing interest or enjoyment • Lack of response to name • Impairment in Communication • Lack of showing gestures • Lack of coordination of nonverbal communication • Unusual prosody (little variation in pitch, odd intonation, • irregular rhythm, unusual voice quality) • Repetitive Behaviors and Restricted Interests • Repetitive movements with objects • Repetitive movements or posturing of body, arms, hands, • fingers

36. IDEA Early Identification Efforts • Early ID is federally mandated through Part C of IDEA. • Are the processes for early ID similarly mandated? No! • There is currently no standard for ID of children under 2 years. • There is no national data of number of infants/toddlers with or at risk for ASD.

37. NECTAC/NPDC on ASD On Line Survey2009 40 respondents in 30 states/jurisdictions scattered throughout the US and Pacific. • Part C program = 18 • Section 619 program = 13 • Represented both programs = 9

38. Survey Question: Screening Which screening measures or tools are used to screen young children for ASD? States could select “all that applied” from a list of typically used measures.

39. Screening Tools Screening tools most often used out of 10 screening tools identified. Most respondents indicated that more than one screening tool is being used (N=36, 90%).

40. Survey Question: DiagnosticProcedures/Instruments Identify the instruments/procedures used to diagnose ASD in children under five years of age. States could select “all that applied” from a list of typically used instruments or procedures.

41. Diagnostic Instruments/Procedures Most frequently identified diagnostic instrument/procedures used in states. Most respondents indicated that multiple measures were being used (N= 29, 81%)

42. Current Trends: Age of Earliest Diagnosis 87.5% of Part C and Section 619 coordinators indicated a trend in diagnoses before age 3 <18 months = 3 (7.5%)* Between 18 and 23 months = 17 (42.5%) Between 24 and 35 months = 15 (37.5%) Between 36 and 47 months = 4 (10%)** Between 48 and 59 months = 1 (2.5%)*** *Part C only; ** 3 of 4 Section 619; *** Part C

43. Stability of 18 month Diagnoses • Stable when clinically referred and diagnosed by experts • Stable following multiple stage screening and diagnosis (Cox et al., 1999) • Validated diagnostic instruments: AOSI and Toddler ADOS (2011) are coming

44. Conclusions • Trend toward earlier ID. • Two primary screening tools &diagnostic measures used most often. • Majority of states use multiple tools and diagnostic measures. • Use of multiple tools/procedures for screening & diagnosis of ASD may lead to inconsistencies within states.

45. Conclusions • No national data is collected on number of young children with ASD under the age of three. • National data may under-represent number of 3-5 year olds with ASD due to states’ use of developmental delay category.

46. National Efforts • Priority for multiple federal agencies (Health and Human Services, the Centers for Disease Control (CDC) and the U.S. Department of Education). • Since 2007, CDC, Maternal and Child Health and the Association of University Centers on Disabilities (AUCD) have convened states to improve Early ID: Act Early Regional Summits. http://www.aucd.org/template/page.cfm?id=547

47. National Early Identification Efforts Learn the Signs, Act Early – Centers for Disease Control, National Center on Birth Defects and Developmental Disabilities (http://www.cdc.gov/ncbddd/actearly/index.html) • Free materials for multiple audiences • Developmental Milestones Fact Sheets, interactive tools and videos • Developmental Screening Fact Sheets • Fact Sheets on ASD and other developmental disabilities

49. Recommended Screening Approaches • Level 1: Screen for general developmental delays • Level 2: Screen all children for ASD and Identify(Chakrabarti et al., 2006) • Rationale: tools are much better • Most young children with ASD have delays

50. American Academy of Pediatrics Recommends primary care providers should: • Be aware of early signs of ASD; • Ask all parents about developmental milestones and behavior at each visit; • If concerns are identified by parents/professionals: • Administer an autism-specific screener and/or refer child immediately for a diagnostic evaluation • Screen all children, using an autism-specific screener, at 18 and 24 months of age.